THE LESSON OF NOW: Alzheimer’s and making peace with new limitations

“To get over the past, you first have to accept that the past is over. No matter how many times you revisit it, analyze it, regret it, or sweat it, it’s over. It can hurt you no more.” – Mandy Hale

In the summer of 2011,my Granddad underwent memory tests and was diagnosed with Alzheimer’s disease, a form of dementia. As a neuroscience student, I was torn between learning all I could about this disease and avoiding it at all costs.

In the end, I learned about senile plaques being toxic to neurons; I know the brain regions and I know how chemicals affect neuronal structure. But “severe loss of life” is something I know so little about, and no research could really explain it.

Emotional reactions

I think of myself as a scholar and a seeker. I’m intrigued by life, keen to understand the world and to create my own sensory experiences through writing. I’m not sure if I can even entertain the idea of being a slave to a condition Terry Pratchett defined as, “one which strips away your living self a bit at a time.”But I’m learning. I’m experiencing it, little by little.

This is a man who used to laugh, and go on and on about being hospitable to others and providing a service for your neighbours. This is the man who hiked up mountains until a few years ago, and who told me I should do whatever it was that made me happy.

The man who sat in his chair a year later was depressed, picking up on negatives that weren’t there, and focusing on how “you seem to have another qualification but no one wants to employ you,” four days after I’d finished my course. He also spoke about how there was no point being here when everything in his body was falling apart.

He’d survived skin cancer, a knee operation and eye treatment, and was now losing his mind, a little bit each day. I felt I needed to know about this. My mother asked what was happening in his brain, and I could only open a textbook and read it to her, explaining the jargon as best I could.

But I can’t be a scientist when it comes to this.

Believe me, for a while, I tried. But at the end of the day, he’s my grandfather. He taught me that chess was the answer to all of life’s problems. We played croquet and shared a love of books. He told me stories about his life in a military school, and how he could do cartwheels and handsprings across the grass as a teenager. And we would laugh at how I’ve never done a handspring, as he offered to show me how … 60 years after he last did one!

The lesson of now

Nowadays, he smiles as I come through the door. However, he frowns as I greet him, trying desperately to remember my name. He tries to work out who I am and why I’m in his house.

It’s about making him laugh and smile now, even if he won’t remember our visit in an hour’s time.

I watch my mother blink back tears as her remaining parent slowly loses an understanding of who she is. Each time I visit, I see decline, and I’m reminded that it’s only going to get worse. And I gently remind my mother that it’s about making him laugh and smile now, even if he won’t remember our visit in an hour’s time.

In a way, it’s a profound lesson in mindfulness. He doesn’t have a choice, and in order to alleviate my own suffering, I force myself to create a mindful space.

I don’t plan my visits with him, opting to ask him present-moment questions rather than testing his memory or expecting a history lesson. We focus on the views of the garden in the here and now: things that can continually ground us in the current moment, so he need not remember anything but the past few seconds.We discuss the birds hopping along the grass or the taste of his drink, and I sometimes risk a comment about a pretty windowsill ornament. But even then, he’ll sometimes try to remember why it’s there, or where it came from, and my stomach twists.

Fortunately, a few minutes later, a comment on the current weather can soothe the tension in the room.

Acceptance without powerlessness

I may have knowledge about the brain, and thankfully, I have some pretty good skills in managing emotions. I’ve taught anger management courses, I’ve meditated for over a decade and have been trained in low-intensity Cognitive Behavioural Therapy (CBT) techniques. But I have limitations, and I can’t fix my grandfather. I can’t heal my mother’s grief.

Yet, even taking into account these limitations, I’m not powerless.

I can move through each moment with him, provoking a laugh here or a smile there, sparking conversations with him about something he used to love speaking about. He still has many stories of his youth, even if the details elude him, and he still experiences moments of clarity. But for him, memory only brings confusion and distress. He remembers to apologize, remembers that his mind is decaying, remembers that he’s dying.

I’m thankful that I can still make him smile, have a fun conversation with him, and try to soothe any concerns, should he begin to realize his situation.

He doesn’t know who I am, so I no longer tell him I love him. How uncomfortable would it be for a stranger to say that they love me, while I was unable to recognize them at all? I show my love, though, in creating a mindful space with him. I sit with him and allow us to just be.

A final lesson I can accept

While I’m mourning the fact that he won’t be playing chess with me again, the fact that I can play it at all is a mark he left on me. My way of honouring and loving him is to play chess mindfully.

Sometimes, our gifts of love and compassion need to be rooted in accepting our limitations, and then focusing on the beautiful moments and appreciating them for the beauty they hold.

If nothing else, remember that even in a heartbreaking situation, when you can’t be a scientist because of personal attachments, there may be a lesson to be found in the mindfulness of the moment.

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